Monthly Archives: May 2012

But I wanted to post anyway, before I go on vacation and have no access to a computer unless the Gulf Shores library allows me access.

I received a call this morning from Mary L., Dr. T.’s nurse practitioner. (I know, I know you need a chart to keep up with all these doctors and nurses. Okay, I’ll do it real quick:)

Dr. T. – mesothelioma doctor at MD Anderson Cancer Clinic in Houston. She was overseeing my case, but will now be passing that along to the Sarcoma Clinic.

Mary L. – Dr. T.’s nurse practitioner. She is currently in charge of me, until all of my information is passed along to the Sarcoma Clinic at MDACC.

Mary H. – nurse practitioner who runs MARF. She is my “friend” on Facebook and has been a huge help answering questions and steering me in the right direction with both of my diagnoses.

Dr. S. – surgical OBGYN oncologist at a teaching hospital about an hour and a half ago. He did my surgery and really has stepped out of my case, except for a professional interest. Neither sarcoma nor mesothelioma are in his wheelhouse, but he continues to be kept abreast.

Dr. F. – local oncologist. She is prepared to give me my treatments, as soon as the doctors in Houston work out what they will be

Dr. ? – sarcoma doctor at MDACC. Still waiting to hear who this will be.

So back to Mary L. She called me today to let me know that she has been working on my case, both trying to get me an appointment at the sarcoma clinic and an Angel Flight. She told me today that it normally takes 5-6 weeks to get an appointment at the Sarcoma Clinic, but they have made me a priority and are trying to get me in sooner. They told her that there is one particular doctor they want to me to see, and they are just waiting for him to tell them a couple of dates he has open. So there’s that.

Now, at the same time, Dr. F. is trying her best to get in touch with the sarcoma doc as well. She is ready to begin my treatment and thinks that she should be able to just consult with this doctor over the phone, e-mail, etc., so that I don’t have to go out to Houston again.

I am torn. I see Dr. F.’s point that we should go ahead and get started. My surgery was three months ago. It would also be nice not to incur more travel expenses. However, it may be necessary for me to return to Houston. Sarcoma is a rare cancer (about 1% of adult cancers), but even more than that, there are more than a hundred sub-varieties of sarcoma, which makes each one even more rare. My sub-type, myxiod, is apparently one of the rarer ones. I think. I can’t find anything about it here. If I go out to Houston, they have libraries all over the hospital where I can research and learn about it. And MDACC has the largest sarcoma unit in the U.S.

I guess my hope is to stay home and start treatment, but I am prepared to travel if I need to. On the plus side, Dr. T. confirmed that this is a much better diagnosis than I originally received. Stay tuned, I guess…

I know very little more today than I did last week, but I’m just going to put it out there. Thursday night at 4:55 my doctor from MDACC (Houston) called. She spent a minute or two checking up on me before dropping the bomb. Apparently the pathologists there think I have been misdiagnosed. When they initially ran their tests they came up with some error, so they had to order some more tissue from the hospital where I received my surgery. In their second round of testing, they came up with a myxiod sarcoma, not peritoneal mesothelioma.

What?

No really. What?

Dr. T. did not explain anything to me; she just kept saying it was not her specialty. Dr. S. and Dr. F. were both on vacation. (Though Dr. S. actually called me from his vacation when he heard – to find out what was going on and to ask me to send him my new pathology report to his personal e-mail address. How’s that for amazing?)

So… I am literally back to square one. Mary, the meso nurse, has been in touch with me and she says this is a good thing and I should be celebrating. This morning, though, Dr. F. said it was neither better or worse; it would just require a different treatment regiment. Granted, she has not had the time to study my pathology report. Dr. F. encouraged me to go on my vacation and to enjoy myself and try not to worry. While I am gone, she will be consulting with Dr. S., Dr. T., and whatever new doctor will be taking over my case if it is sarcoma.

I know next to nothing about it, except that it is also rare, which is why it has been to hard to diagnose. I’m torn about whether to just accept this diagnosis or try to get third opinion somewhere. Each diagnosis requires vastly differently treatments, so I would hate to start the treatment for one and it not to work. I’m not even sure where to start if I do decide to go that route.

A little good news, though: my CT Scan came back looking good. There are no large tumors or fluid. There are a couple of spots they are watching, including a hernia and some lymph nodes, but there was nothing detectable to to the human eye, which is wonderful.

So for now, I will take my doctor’s advice and try to relax on my vacation. When I return, I’ll follow their advice as well, whether that means another trip to Houston or simply starting a new treatment here.

I received a phone call last night that may change everything. I cannot blog much about it yet, because I honestly don’t know much about it yet. Most of my doctors/ nurses are on vacation this week, so I am scrambling to get information from wherever I can. Suffice it to say I received this message today, “Much better than a sarcomatoid mesothelioma. Celebrate this as very positive news.”

I promised to post more as soon as I know more, but I’m bursting at the seams, freaking out, celebrating, crying, a little bit of everything. I will probably not find out much more until Monday, so prayers for me, my family, and the doctors will be much appreciated.

Yesterday I had surgery to have my port put in. The doctor was right; it was extremely quick and easy, but boy does it hurt. I mean it. I have an extremely high pain tolerance – extremely high. But let me tell you; I am popping two pain pills every four hours right now, on top of my pain patch. This sucker is no joke. The surgery was definitely the weirdest one I have ever had. They put me in what’s called a “twilight sleep” where I was supposedly knocked completely out, but I could still hear everything. And boy could I. Towards the end of the surgery I just started talking back to them. I guess I was waking up at that point? I dunno; it was strange. But the port is in. I can’t take the bandages off for 72 hours, so I have no idea what the scar will look like. I just hope it stops hurting so bad soon. Two pain pills at a time make me crazy-loopy. (Also, if this post winds up making zero sense, that is why.)

Now, my doctor in Houston who specializes in meso, Dr. T., put me on the right path to “meet” (virtually) other survivors and caregivers across the U.S. She showed me the website for the Mesothelioma Applied Research Foundation (MARF). A couple of things about this site make it different from any of the lawyer-run asbestos sites. First of all it is run by a nurse practitioner, Mary, who has more than twelve years experience working with mesothelioma patients and their families. Every single person I have “met” just sings her praises. She can put you in touch with the right doctor, the right specialty. She’s on top of all the medical trials and because she is an NP, she can answer any questions about drugs or side effects or meso in general. When I first joined, Mary contacted me personally and gave me her personal phone numbers so I can reach her any time with any questions. Secondly, as you can probably tell from its name, MARF is all about the research – and, in turn, the advocacy. They really want to get the word out there about meso so that researchers can find a cure.

Now, for the few days after I joined, I poured over that website. I learned everything I possibly could. I attended my first support group. I even tried out the message boards. Here is where the problem started for me. The message boards seem, for lack of a better term, stagnant. Everyone sort of felt their hands were tied not wanting to post too much, for the lawyers peruse the boards as well. Also, because MARF is more about advocating and getting the word out, I wasn’t sure where my place was.

Solution: MARF hired a Web Content and Social Media Manager, Tee. And let me tell you, for me at least, things have exploded. He has done so much and it seems like those affected by this disease (whether they be caregivers or survivors) are coming out of the woodwork. I have joined a Facebook group for survivors and am blown away by some of the stories. Some of the (years and years and years) of treatments scare me to death, but the point is: there are survivors out there who have beaten it. After spending the last (indeterminate amount of time) thinking that it could not be beaten – that I would have it forever – this is a breath of fresh air for me. There are at least two women (possibly three) who have very similar stories to mine – diagnosed in their twenties or thirties with peritoneal meso – now living healthy lives. I have found no one with sarcomatoid yet, but just hearing these other stories gives me so much hope.

In other news, I will be walking the Survivors Lap in Relay for Life tomorrow night. (Ooh, I hope I am able to tamper down the pain pills by then; I would hate to walk looking like a drunk!) I am really looking forward to it. I’ll be honest, when I was first diagnosed with cancer, I told my husband I didn’t want to become one of those “vocal” people who did all those races or whatever. And I was wrong. Cancer does need money for research. It doesn’t matter how many strides have been made over the years, cancer is still here. It still affects millions of lives every day. Meso especially needs those research dollars. I hope others in the area will join me tomorrow night. The survivor lap is early; I think around 6:30, but I plan to stay for as long as my son can handle it. (He normally goes to bed around seven, so it may not be very long, but we’ll see.)

Thank you for taking the time to read my blog. I am truly blown away that anyone wants to read what I have to say, and I hope that I do not bore you too much! Prayer requests this week: most especially healing from the port surgery. I am back to not being able to pick up my kid, not to mention the pain I am in. I also have a couple of unspoken prayer requests for friends and family members. And I have an appointment on Tuesday that may lead to an important decision. Please pray for that. And again, thank you.

First and foremost, I am back to not sleeping at night again. The past two nights I woke up every 30 mins- an hour, and stayed awake for about 45 minutes each time. (For those of you new to this blog, this has been an ongoing battle since February.) I think I’m going to have to break down and start using the sleeping pills the doctor prescribed, even though they didn’t work very well when I took them in February. It truly seems the only nights I have gotten any good sleep is when people are praying for it. If you think about it, will you pray that I start to get some good (regular) sleep?

Also, I have to go into surgery again tomorrow. It’s an outpatient surgery to have my port put in, but it will take me about four hours, mainly because they have to do x-rays before and after. The x-ray before is to determine the right spot to place the port, and the one after is to make sure my lung didn’t collapse in the process of placing it. (Yikes!) I won’t know what time the surgery is until they call me tonight, so please pray throughout the day.

Finally, my back is acting up something fierce right now. Because of all the appointments I’ve been having, I haven’t had time to make my regular visits to my chiropractor. If you don’t know me personally, my story is this: I had a major car accident (my fault) when I was eighteen and a minor one (not my fault) when I was 23. These two combined did a number on my back that sent me to the emergency room at least once a year (sometimes more) when I literally could not stand up from the pain until I started seeing a chiropractor regularly. (If you want the whole spiel, it turned out that the accidents had knocked my spine out of alignment which was placing pressure on my lower vertebrae. The fluid between the vertebrae started to deflate and a couple of the vertebrae in my lower back popped out. Very painful.) Anyway, once I did some extensive therapy, I eventually got to where I can just see the chiro as needed. But, like I said, it’s been difficult to get in with all the other appointments. Will you pray that I get some relief until I am able to go see him?

Sorry it took me awhile to get to this post. I intended for it to be one of the first on this blog, but I wasn’t quite ready to tackle it just yet.

Thursday afternoon I “attended” my first support group for people who have peritoneal mesothelioma. Because it is so rare (and because lawyers are chomping at the bit to get a client who is suffering from this disease), the support group has to be done over the phone. A few hours before it begins, Mary – the Nurse Practitioner who has spent the last fourteen years of her life treating and advocating for this disease – sends an e-mail with a phone number to call and a code to get in. People from all over the U.S. who have this disease call in and we talk about where we are in our fight, medicines we are taking, and whatever else is generally on our minds. Five people called in. Five. Does that tell you how rare it is?

I was first diagnosed about a week after my surgery. For those of you who don’t know, a large tumor was found near my liver on February 8, 2012. A CT scan on the same day showed another one near or on my ovaries. My general physician, Dr. R., decided to send the scans to my OB, Dr. A., because he did not normally handle female issues. After looking at my scans, Dr. A. knew this was larger than he could handle, so he sent them to Dr. S., an OBGYN Oncologist at a teaching hospital about an hour and a half away. I was not able to get in to see Dr. S. until Feb. 22. By then I was in so much pain that he immediately admitted me into the hospital and scheduled surgery for the next day. (There was, of course, a mad scramble at that point, as my mom was watching our son but wanted to be with us. My amazing in-laws drove up, picked up my son and a bag of his stuff, and then proceeded to completely rearrange their schedule for the next ten days – which is how long I was in the hospital.)

Anyway, Dr. S. was straight with us that I was going to lose my ovaries, but he asked if we wanted him to leave the uterus if it could be saved. (At this point we were pretty sure it was ovarian cancer.) Obviously, all I know about the surgery is what others have told me. Here is what I have gathered: Dr. S. started the surgery while my mom, dad, and husband waited in the waiting room. Every so often they would get a call updating them on the progress. The first call informed them that the uterus could not be saved. This was devastating news to my husband, as we always planned to have more children. A few hours later, another call was placed letting them know that this was much more extensive than we originally thought. I am not sure how long the surgery lasted, but I do know that in the end a complete hysterectomy was performed. On top of that, they also had to take my spleen, my appendix, and my gall bladder. Another surgeon had to be called in to make the decision if the liver could be saved, because the cancer had attached to the outside of the liver. He was able to peel it off the liver without having to cut, and all the surgeons spent many hours getting every single nodule they could find. This was extremely difficult, as the cancer was very diffused throughout my abdominal cavity, but they feel like they were able to get everything they could see. I later found out that this was called “debulking” and is a traditional part of the treatment for peritoneal mesothelioma, if the patient is healthy enough for surgery.

After the surgery, I had to stay in the hospital for eleven days. It was very, very major surgery and I was lucky to have as few complications as I did. Every day after the surgery, my doctor would come in and say that they did not know what type of cancer we were dealing with yet. Finally after about a week, he said, “We know what it is.” He told us it was peritoneal mesothelioma, and my first thought was, “Why do I know that word?” We don’t have cable, and only watch a couple of TV shows a week, so it was not immediately clear to me that this was being advertised on TV. He went on to explain that there is a difference between peritoneal (of the abdomen) and pleural (of the lungs). And that was it. He did tell me that he had only seen four cases in his twelve years practicing, but no one told us anything else. I was still coming out of my fog that is surgery and lots of drugs, so I didn’t question much more. I was just happy to have a diagnosis. I found out later that my family was not like this. They immediately took to the internet. And freaked out. If you don’t already know, most of the websites out there are run by lawyers and they are extremely bleak. By the time I was healthy (and mentally ready) enough to want to look, my mom heavily discouraged me looking up anything on the internet. And let me tell you, there are no books out there about this.

So pretty much, I spent the next couple of months in near-ignorance, lapping up anything any doctor or nurse would tell me and counting down until I could get to MD Anderson Cancer Center where they actually studied this disease. When I finally arrived, Dr. T. put me on the right track to find (correct) information and answered every question I could think of. Here is what I now know, both about my disease in particular and the disease in general.

My particular disease is extremely aggressive. When my debulking was done, it was determined that it had already metastasized, or spread to other organs. It was determined that I was already Stage III, or “locally advanced”. (No one has told me this, but it my belief that the only reason I was not classified Stage IV is because it had not attacked my lymph nodes yet.) It was also determined that it was sarcomatoid. The best definition I can find for this is: Sarcomatoid, which makes up about 7-20% of mesotheliomas, has a very unpredictable pattern or nature. Under the microscope, it appears like spindly cells which look like supportive or connective tissue. It is the least common variant of mesothelioma. If you go to some of the websites created by lawyers, you will see things like “Generally, patients diagnosed with sarcomatoid mesothelioma have a poorer prognosis and experience little response to treatment.” and “This form carries the poorest prognosis in comparison to other cell types and is often labeled as the more aggressive type of mesothelioma.” Can I just take a minute right here and say that I really, really don’t care what the lawyers have to say about sarcomatoid mesothelioma? They are trying to get clients, and they did not attend medical school. Beyond that, I have faith. I believe that God is going to get me through this. He can do anything, and I am totally just along for the ride. What He chooses to do may not be what I expect, but let me tell you there is nothing like a cancer diagnosis to remind you that you are not in control – He is!

Back to mesothelioma in general. Because this is such a rare disease, a lot is not known. Dr. S. told us he thought it was a genetic abnormality. Dr. T., however, who specializes in this disease, absolutely believes it can only be caused by exposure to asbestos. She was very firm with me about two things when I saw her – that I join a support group and that I hire a lawyer. Not because I need to sue anyone, but because I absolutely need to know where I received my exposure, so that this can hopefully help others from going through the same thing. (Also, before anyone contacts me offering information or a lawyer, I have all the information I need and I have retained a lawyer. We truly struggled with this, because I have no desire to sue anyone, but Dr. T. is right. We really need to know where this exposure happened, and lawyers have the best resources to find out. This is probably all I will say about this, because my focus is not on this, but on getting well, serving the Lord, and being the best mama/ wife/ daughter/ sister/ etc. I can be.)

Now, I never thought I would ever become an advocate about anything, but sometimes life throws things at you and you can sink or swim. Here is what I am learning about asbestos and mesothelioma. Asbestos is not just one material, but actually six separate naturally occurring minerals. It has been widely used as an insulator. Here is what blew my mind: did you know that even though it has been known since the early 1900s that it can cause cancer, it is still not illegal in the United States (or Canada) to use asbestos in construction? Think about that. A house built this year could conceivably still have asbestos in it! Crazy, hunh? No one knows why some people who are exposed contract meso (or lung cancer or asbestosis) and some don’t. Right now, it is thought that it does not matter if you have prolonged exposure or very little exposure. In my case, we have racked our brains and cannot come up with a single exposure. My parents have mostly worked office-type jobs, so it is probable that they did not ever bring home the fibers on their clothes. None of the houses we lived in had any asbestos that we know of. The best bet is probably in the school I attended as a young girl. (Did I mention that it typically takes 20-30 years from the time of exposure to the time the meso shows up? I am 31.)

Also, because meso is such a rare disease it does not receive nearly as much funding as other cancers. There is a chart here that illustrates the lack of funding pretty clearly. It shows the funding per cancer, the deaths per cancer, and the “funding factor” relative to meso funding. The word that best comes to mind for me is tragic. As someone fighting this disease, I obviously want there to be more funding. We need to find a cure. We also need to make asbestos illegal. No one should have to go through what I am experiencing. I don’t plan to do much advocating this year – I plan to focus on getting well – but I hope that this blog will help educate others.

Okay, off the soapbox for now. I hope I didn’t get too much off track and that I explained things clearly. If there is something you still don’t understand, please feel free to ask me any questions you want. I will do my best to explain or find the answer for you.

A couple of people have mentioned to me that they do not receive an e-mail when I post now, like they did when I was on Caring Bridge. I’ve been reading about this and I *think* all you have to do is press the “Follow” button in the upper left-hand corner. You may have to log in on a computer instead of a smartphone, as a couple of people told me that they don’t see that button on their phone. I don’t have a smartphone, so I can’t test it out myself. Will someone test it out and let me know in the comments if it works?

I also wanted to let you know about a couple of events coming up soon. I will not get into real specific details on here, but feel free to reply in the comments (or e-mail or Facebook) if you want to know more. My husband and I are going to walk the Survivor and Caregiver laps at Relay for Life on Friday. This is the Relay for Life for our county. If you want more information, you can go to Relay for Life and type in our county (or contact me and I will let you know what I know). Also, I belong to an amazing community and have made a really great group of friends though a Breastfeeding Mom Support Group held at the local hospital after my son was born. Even though he is now 2.5, I am still very close with many of these women. They have been talking amongst themselves about how to best help me though this. One of the moms is a yoga teacher and she has agreed to teach a donation yoga class with the proceeds going to our family. This will take place in a local park on June 16. Let me know if you want more details!